Patient engagement in a national research network: barriers, facilitators, and impacts

Background Little is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and meaningful. To extend our understanding of the barriers, facilitators, and impacts identified by patient-partners and researchers, we conducted this qualitative study. Methods Participants completed semi-structured interviews and were recruited from the CHILD-BRIGHT Research Network. A patient-oriented research (POR) approach informed by the SPOR Framework guided the study. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. The data were analyzed using a qualitative, content analysis approach. Results Twenty-five CHILD-BRIGHT Network members (48% patient-partners, 52% researchers) were interviewed on their engagement experiences in the Network’s research projects and in network-wide activities. At the research project level, patient-partners and researchers reported similar barriers and facilitators to engagement. Barriers included communication challenges, factors specific to patient-partners, difficulty maintaining engagement over time, and difficulty achieving genuine collaboration. Facilitators included communication (e.g., open communication), factors specific to patient-partners (e.g., motivation), and factors such as respect and trust. At the Network level, patient-partners and researchers indicated that time constraints and asking too much of patient-partners were barriers to engagement. Both patient-partners and researchers indicated that communication (e.g., regular contacts) facilitated their engagement in the Network. Patient-partners also reported that researchers’ characteristics (e.g., openness to feedback) and having a role within the Network facilitated their engagement. Researchers related that providing a variety of activities and establishing meaningful collaborations served as facilitators. In terms of impacts, study participants indicated that POR allowed for: (1) projects to be better aligned with patient-partners’ priorities, (2) collaboration among researchers, patient-partners and families, (3) knowledge translation informed by patient-partner input, and (4) learning opportunities. Conclusion Our findings provide evidence of the positive impacts of patient engagement and highlight factors that are important to consider in supporting engagement in large research teams or networks. Based on these findings and in collaboration with patient-partners, we have identified strategies for enhancing authentic engagement of patient-partners in these contexts. Supplementary Information The online version contains supplementary material available at 10.1186/s40900-023-00418-5.

The CHILD-BRIGHT Network is dedicated to patient-oriented research. Various stakeholders including patient-partners (youth, parents), researchers and clinicians, are involved at different levels of the Network and contribute as committee members and/or as research project advisors. The Network is committed to continuously improving its level of engagement and collaboration with patient-partners. Therefore, evaluating the Network' s patient engagement and its impacts is an essential ongoing activity.
Patient-oriented research and patient engagement evaluation are rapidly evolving fields. In this brief, which is Part 1 of a three-part series on patient engagement, we are presenting preliminary findings of our patient engagement evaluations and describing our journey as a Network in refining our approaches.
Parts 2 and 3 of this series share the results of our survey about engagement during the COVID-19 pandemic and the findings of a series of interviews with our network members about patient engagement, respectively.
The CBPR is an evaluation tool that looks at the degree of different kinds of stakeholder involvement and partnership in the research process, and how researchers are engaging with various stakeholders, including patient-partners. There were two different CBPR versions. One version was sent to various stakeholders who interacted in different ways with research projects. This ' stakeholder version' was sent to patient-partners, staff or trainees, coinvestigators, and committee members who informed CHILD-BRIGHT patient-oriented work. It asked respondents about their experiences engaging with CHILD-BRIGHT projects, including project planning, data analysis, and providing input for decision-making, and the level of partnership and trust they felt in the process. The other version of the CBPR was sent to the lead researchers who were involved in CHILD-BRIGHT research projects (' principal investigators' ). This version asked the researchers how they felt they engaged with stakeholders and how well they thought stakeholders were engaged in CHILD-BRIGHT.
We sent the CBPR to stakeholders in three consecutive years: 2018, 2019, and 2020.
In 2018, we launched our first engagement evaluation. We were interested in how different Network members experienced their involvement. We invited researchers, patient-partners (including parents and youth), trainees, and committee members to complete an online survey, the Community-Based Participatory Research (CBPR) questionnaire. For the purpose of this summary, we describe how patient-partners (youth with disabilities, parents of children with disabilities), or committee members (which could include patient-partners, researchers, and clinicians) were engaging with CHILD-BRIGHT. We also report on how well principal investigators felt they had engaged with patient-partners in their research projects. We report on the type of stakeholders presented in Table 1.
In 2018, at the start of CHILD-BRIGHT projects, 86% of researchers felt that they engaged with patient-partners in their CHILD-BRIGHT research to a moderate or great extent. Most patient-partners agreed that they felt comfortable sharing their opinions with CHILD-BRIGHT (91%), that it was a true partnership (83%), that they were satisfied with their level of involvement (84%), and that there were high levels of trust (88%). The highest levels of involvement occurred in areas of developing research questions or deciding on issues to research.
In 2019 and 2020, when projects were underway, all researchers felt that they had engaged to a great degree with patient-partners. In 2019, all patient-partners reported agreeing to feeling comfortable sharing their opinions. For instance, 81% agreed that their engagement represented a true partnership, and 89% noted that they were satisfied with their level of involvement. In 2020, all patient-partners had high levels of trust and noted being satisfied with their level of involvement, with the highest level of patient-partner involvement occurring in the areas of creating research instruments or guidelines, and in disseminating or sharing findings.
Looking across time points, responses were consistently very positive. The pattern showed growing patient engagement and a deepening of the quality of the partnerships.

In 2 020, we ai m e d t o f u r t h e r e n r i c h o u r u n d e r s t a n d i n g of patient e n g agement a n d p r o c e e d e d t o c o n d u c t p r o j e c t -s p e c i f i c e n g agement e v a l u a t i o n s . We i n t r o d u c e d a n e w e v a l u ation a p p roach, usin g a n i n s t r u m e n t c a l l e d t h e P u b lic and Pat i e n t E n g agement E v a l u a t i o n T o ol ( P P E E T ).
In all four areas of the PPEET, researchers' responses ranged between ' Agree' to ' Strongly agree' 87-100% of the time depending on the question. On average, 93% of researchers responded "Agree" or "Strongly agree" to the questions being posed. For example, researchers "agreed" or "strongly agreed" that patient-partners have the supports they need to participate and can share their views freely. In addition, they are also confident that the input provided by patient-partners is making a difference in the work of research projects.
Similarly, committee members' responses ranged between ' Agree' and ' Strongly Agree' from 75-96% of the time (88% on average). For patient-partners, the responses ranged between ' Agree' to ' Strongly Agree' 67-100% for all four sections (91% on average), with youth having 100% of responses ' Agree' or higher for every question on the PPEET.
Overall, patient engagement and its impacts were consistently highly rated across the different CHILD-BRIGHT Network stakeholder groups, especially within research project teams. Researchers, committee members, and patient-partners reported high levels of satisfaction with patient engagement in the Network.
A preliminary overview of the responses to the openended questions of the PPEET both highlighted areas where activities have gone particularly well and identified areas needing improvement. Patient-partners noted that early involvement helped enable greater impact on the research project and its advancement, and that regular and detailed communication kept them engaged. Several said that their engagement had deepened over time. On the other hand, greater diversity (e.g. more fathers and people from a greater range of ethnic and racial backgrounds) is needed. Furthermore, in some instances, greater role clarity for patient-partners would be beneficial. Our findings to date suggest that the CHILD-BRIGHT Network is effectively implementing strategies for authentic and impactful patient-oriented research.
Overall, patient-partners are satisfied with their level of engagement in the Network' s research and governance. The quality of patient engagement is highly rated across the different stakeholder groups of the CHILD-BRIGHT Network.
The CHILD-BRIGHT Network has 13 different research projects. In refining our evaluation approaches over time, we determined that patient engagement was positively rated within the different projects. These results are encouraging given that we partner with members across a large, nation-wide network, where connections are primarily virtual, and most members were novices to the patient-oriented research process at the onset of the Network' s activities. The open-ended responses to the CBPR and PPEET surveys are to be analyzed in more detail in the near future. To enrich our understanding of the patient engagement experience, the Network has also conducted semi-structured interviews with different stakeholders to complement those findings, which are currently being analyzed.